Donella Knox in the High Court in Blenheim during sentencing. Photo: RNZ / Tracy Neal
The chief medical officer of Nelson Marlborough Health has commissioned an external review on the provision of health services for people with high and complex needs.
Dr Nick Baker ordered the review after the circumstances of Ruby Knox's death came to light.
Her mother, Donella Knox, murdered the severely autistic and intellectually disabled 20-year-old. Donella Knox was jailed for four years in December by the High Court in Blenheim, but the case could not be reported until suppression was lifted late on Friday.
Christchurch barrister Simon Shamy, who represented Ms Knox, said the case was the most tragic he had dealt with.
Ms Knox was the sole carer for Ruby for 20 years. The degree to which she was disabled meant she could not speak, was violent and needed constant care.
Mr Shamy said Ms Knox lacked social support and was financially stressed.
In May last year she gave Ruby sedatives and suffocated her, then went to a police station and admitted her actions.
A friend and supporter of Donella Knox will petition for a better support system for parents struggling with children with severe mental illness.
Dr Baker offered his sympathy to those who knew Ruby, on behalf of Nelson Marlborough Health, for her life being taken this way.
He said they included health and support staff who supported and cared for Ruby since she was a young child.
"As stated by Justice Joe Williams in his sentencing of Donella Knox for murder, Ruby's disabilities did not lessen the highest value the law places on human life. There are many unique factors about this tragic event that cannot be publicly disclosed under privacy law.
Dr Baker said autism was one of the most challenging conditions to provide care and support for.
He expected the review to start in May, and anticipated it would validate "the tireless efforts and expertise of multidisciplinary teams who cared for Ruby over the years".
Donella Knox a devoted mother - judge
Justice Williams described Ms Knox as a devoted mother who cared for Ruby constantly.
He said when Ruby was 11 years old, Ms Knox moved to Nelson to get better support. He said surgery for Ruby's severe spinal condition offered some relief in that Ruby could manage at school. Caregivers allowed Ms Knox some respite and normality.
Justice Williams said a GP in Nelson consulted Ms Knox on more than 150 occasions.
He said the doctor was privy to the chronic and exhausting situation the pair faced and was impressed by Ms Knox's ability to care for Ruby.
Several years later, in the months before Ruby's death, Justice Williams said Ms Knox felt increasingly desperate. She felt the medical profession had given her the brush off.
"You were a tireless advocate with health authorities and health professionals. You refused to give up and you refused to take 'no' for an answer.
"You were, it must be said, supported by authorities with respite care and constant engagement from specialists - indeed teams of specialists and multiple general practitioners, but it must be said the burden of Ruby's care lay with you - a burden you accepted willingly."
Petition coming, but Donella Knox does not want protests
A friend and supporter of Donella Knox will petition for a better support system for parents struggling with children who have severe mental illness.
Sharna Butcher initially planned a nationwide protest in support of Ms Knox and her struggle, but said today Ms Knox did not want to be associated with it.
Ms Butcher said the lack of follow-up from agencies was a problem.
The petition would call for an over-arching agency to be set up "that oversees, reviews and controls all government sector services and agencies that currently fail us".
"While there is a lot of support, there's a lack of follow-up, throughout every government service, whether that's sending notes to a specialist," Ms Butcher said.
Ms Butcher is now calling for signatures through a preliminary online petition she hopes will form a formal petition to be sent to Parliament.